I've been thinking all day what to make of today's injections. I'm not even sure what to write. Maybe someone can help me figure it out. I thought today was a pretty pivotal appointment- it was my sixth injection and if I wasn't getting any better it would be my last, leaving surgery as my last option. If I was getting better, I'd set up 6 more weeks of 12 injections. I think that if I'm not better by those 6 weeks, I stop because my doctor gave me the impression this treatment only lasts 12 weeks.
I guess I'm upset because I didn't get that surge of hope I was hoping desperately for. I went through the same motions today and got the two needles. The right side didn't hurt as much, but the left side hurt a lot more. The exam itself felt to be about the same to me, possibly a little better. But it was still unbearable. I didn't bleed as much this time after the injections, which was a positive note. Also, my doctor said that the redness around the vulva was very minimal now, which is a great improvement. I just don't understand why I'm not feeling better pain-wise. I'm still hanging on to the hope that it'll come in time.
My doctor and I decided to go for 6 more weeks. He felt that if it was feeling a little bit better, it was worth trying. I asked him if I should be feeling a considerable amount better, and he said most are 100% by the 6th injection, which I am clearly not. I asked if it was worth it, and he seems to think so. I guess I don't have another choice and I might as well keep trying it. At this point, it's easy to separate myself from the pain- it's becoming second nature and part of my routine. "What are you doing today Tamra?" "Nothing much, just playing tennis, grabbing breakfast, and getting needle injections in my vagina."
All humor aside, I'm so glad that I'm going again for 6 more weeks. It gives me 6 more weeks of hope. I honestly don't want to stop them, because then there is nothing I can possibly do until I have time to do the surgery- which at the earliest wouldn't happen until the summer. As crazy as it sounds, I would choose to go in every week from now until the end of the school year, just so I feel like I'm doing something. I'm so scared to be without treatment; I don't want to feel helpless. I'm a very proactive person, and I constantly need to be moving and doing things. The last thing I need is to just "deal with it" for the rest of the school year.
So I really don't know how to feel right now. I certainly don't want to scream cries of joy from the rooftop, but I'm not depressed either. I'm bummed I didn't get what I wanted today. I still don't know if they'll work or what will happen, and I'm just entering the cycle yet again. But on the other hand, I'm happy I'm still doing something and still have hope to hold on to.
It's been over a year now since I first starting having pain- I've forgotten what it feels like to live without it. I'm in the process of reevaluating how I've handled everything. One thing I'd like to change is the way I feel about myself. I still haven't felt good about myself in a long time. It's so frustrating and difficult and impossible to explain to anyone who isn't going through it. I don't feel hot, I don't feel like a sexual being, I don't feel wanted, I don't feel like I have anything to offer... it's many things. I am glad that I'm single, because then I don't feel added pressure to get better and feel guilty all the time. Hopefully others can vent about it too so I don't feel like an idiot.
Right now I'm just keeping busy and chugging forward. It's the only way I know. Until next week.
6 comments:
You NEED to be going to an excellent PT. Do not have surgery until you have had good PT. Surely there is one in Philly, I will try to find one for you. Surgery OFTEN makes people worse because the muscles and the nerves are angry and surgery makes them angrier.
therapists that rhonda kotarinos recomended:
debbie landau new york city, ny
debbie brodzik louisville, kentucky
ann levesque boston, mass.
jessica mckinney boston, mass
laura fraiser san francisco, calif.
angela spruill los angeles, calif.
heather jenny omaha, nebraska
laurie drake rockford, illinois
Perhaps one of these may know someone in Philadelphia or email Rhonda Kotarinos or email Stephanie at www.pelvicpainrehab.com and see if they recommend someone in your area. And again, biofeedback readings are often incorrect.
Don't feel bad about yourself; you have plenty of things to offer. Remember, it's not all about the physical. A person is made up of so many facets. You're a strong person and many people will find that attractive. Don't get down on yourself! Best of luck to you!!
tamara,
Don't give up. I am 39 married, 2 small children and am living with vvs too. Surgery could be the answer. Are you going to a vulvar pain specialist? Contact me if you want at Alanaquigley@mac.com. Again, Don't stop looking for answers.
hey! I was diagnosed with VV when I was 19 (I'm 31 now)--I second the opinion that you should try physical therapy with a PT well trained in treating this condition. I was treated by http://www.pelvicpainrehab.com/ and they really know what's going on with pelvic pain. Perhaps if you wrote them they could recommend someone in your area? At the very least I think it's a good idea if you can at all to visit them (or Rhonda in Chicago) and find out what's going on with your body, and then plan treatment from there? Sorry this is so long, please feel free to write me at asphodelie@gmail.com if you'd like to know more, I've had quite a little journey with this myself.:) Best wishes!
yes, yes, yes!!! you need to give physical therapy a shot. Please please do that before you have any irreversible surgeries, which can result in even more pain. Rhonda Kotarinos is excellent, and anyone she can recommend would be worth going to. Do not just pick a PT out of an insurance book. You'll need one that is specially trained and experienced in pelvic floor PT... which is very different from PT for incontinence no matter what they may tell you. Best of luck to you! You don't have to live in pain, you CAN get better!
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